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Monthly Archives: January 2017

Ani’s been chronically ill for several years now. It’s getting worse. She’s always been sickly. She reacted badly to her four month shots (and almost all vaccines since as well). At 2 she was diagnosed with insomnia. At 13 she was diagnosed with migraines. At 14 she was diagnosed with Celiac (which explained issues she’s had since she started eating solid food and going off gluten did help a lot). At 15 she was diagnosed with inappropriate sinus tachycardia (and is on a beta blocker for it). She’s almost 17 and a whole lot of doctors are trying to figure out what in the world is going on with her.

Her main symptoms are extreme salt craving, muscle weakness particularly in her upper back and neck, muscle aches particularly along the sides of her thighs, joint swelling, easy bruising, extreme fatigue that is worse when she first wakes up, constant nausea, dizziness, ringing in her ears, brain fog, frequent colds, skin darkening on various parts of her body such as her toes and arms kind of like a spotty tan, feeling like she can’t properly inflate her lungs (but pulmonary function test was fine), vision going black when she stands up no matter how fast or slow, depression, panic attacks, and feeling dehydrated. Her primary doctor had her test her blood sugar for a few weeks. She usually was in the 90s to low 100s fasting in the morning, 140s up to low 200s before dinner, and in the 80s and 90s two hours after dinner (insulin resistance pattern). Her thyroid has been thoroughly checked twice and is definitely not the problem.

She saw an endocrinologist last week. She’s testing her for Addison’s Disease in three weeks. Friday she’ll be having an MRI of her brain and brain stem to see if there’s some reason she’s having two migraines a week and has a constant headache all the time. Monday she’s seeing an immunologist to see if everything is related to an undiagnosed allergy or immune system problem. Mid-March she is seeing her rheumatologist to rule out chronic fatigue syndrome or fibromyalgia. She also will be having a sleep study because of her insomnia (edited: That has been scheduled for Tuesday night). That hasn’t been scheduled yet. Hopefully ones of these tests or doctors will get this figured out.

The biggest problem is how much being ill interferes with her everyday life. She had already concluded that traditional college is out for her. Her health crashes too easily. For the last three years, she started getting up early for seminary and made it anywhere from one to seven weeks depending on the year. This year she tried hard (seven weeks), but by mid-October she had been sick constantly since the end of the first week and it took until sometime in November before she could get out of bed to do more than just go to work. Luckily, she has managed to find a job she loves that can turn into a career that only needs on the job training and a black belt. She hopes to be able to take college classes, but on-line may be her only option. It was both sad and nice when the endocrinologist confirmed that’s really her future right now and attending college classes is likely to just make her health worse.

For a long time we’ve been not allowing her to do much because she pays for it with her health crashing. But we realized that that isn’t a good idea because she still is a 16-year-old girl. She deserves to have some fun in life. So, recently, we’ve allowed her to do more. She went to the MLK walk and to Pax South. And she had fun. She paid for it. She’s paying for Pax now (it was Saturday). But it’s better to have fun and then end up in bed for a few days than to be in bed most of the time anyway, but never get to do anything fun. She’s good at determining what is worth it and what isn’t.

It’s hard to have a chronic illness, especially when you are a teenager. It’s even harder to have no idea what it is. Sometimes I feel like we are on an episode of Mystery Diagnosis. We’re determined to get a final answer with this round of specialists and tests. We just need Ani to be healthy.

Surface Test: The boys each chose a bit of ground that appealed to them and made a rubbing of it.

Embarrassing Object: The boys had to create something that made them uncomfortable. Cameron’s represents anxiety in social situations. Fritz sculpted a pile of poop. Adrian said he couldn’t think of anything that makes him uncomfortable.

Become a Sci-Fi Character: The boys had to create something that they could pretend would make them a sci-fi character. They all decided to use aluminum foil. Cameron made a helmet that protected him from craziness. Fritz made a super powerful armband with an antenna so he could pick up on long distance transmissions. Adrian made super sunglasses that made it so he could see all the way around the earth and back to the back of his head.

For the Laurel class mid-week activity last night, Ani put together an escape room. The story was Russia had just launched their nukes and the girls had one hour to solve all the puzzles and find the abort code and save the world.

We got to the church a few minutes early and got things set up. We put things the girls would need on the walls.

We spread the boxes to unlock as puzzles were solved around the room.

We set up the computer on a table in the corner. The language was set to Russian (one girl knows a little Russian and it actually came in handy) with a nice picture of Russia as the background. The girls needed to find the code to get into the computer and another code to get into a file on the computer.

We spread the keys around the room. Since we didn’t have physical locks and keys to use, Ani wrapped toothpicks in washi tape and tapes the boxes shut using matching washi tape.

Once the room was ready, they went in the room and the clock was started.

To get into the Russian theme, the password to the computer was 10071952 (Putin’s birthdate), the code they figured out using the English Book of Mormon was St. Petersburg, the code they figured out using the French Book of Mormon was Vladimirovich (Putin’s middle name), the password for the file on the computer was 862 (year of the beginning of the traditional history of Russia), and the abort code was 05072012 (the date Putin became president of Russia).

The key taped under the chalkboard gave them a box with puzzle pieces. The puzzle pieces, when put together, revealed the password to the computer. The key taped onto the back of the laptop opened the box with the English and French Books of Mormon. The Post-It notes on the wall (which led to a pigphen cipher), when solved, gave the girls the password to the file on the computer (this puzzle took them the most time to solve).

The Books of Mormon code was solved by going to page number-verse-letter number. They had to figure out what the code meant, but knew which book they had to use to get the answers. That code gave them access to a box with popsicle sticks wrapped in pipe cleaners. They had to unwrap the pipe cleaners and all but one stick said “try again.” The one with the key ended up being one of the last they opened. That key opened the box with an envelope with the abort code.

The girls solved all the puzzles and got to the abort code envelope within the hour time limit and so they saved the world from destruction! They really had fun solving the room and Ani had a lot of fun putting it together.

Adrian’s working toward his Wolf badge in Cub Scouts right now. One of the requirement options for his Hometown Heroes elective adventure was to honor a serviceman by sending a care package along with a note thanking them for their service. We decided that would be fun to do (and could also be our random act of kindness for the month).

I talked to my friend who has a currently deployed son and asked if we could send him a box. She said they love themed care packages so we decided to get creative and choose things that fit the words of the Scout Law (and included what I wrote below to explain why we chose each item).

A Scout is trustworthy (you have to be trustworthy to play cards with your friends),

loyal (tissues will always be loyal to you, ready and waiting when you need to blow your nose),

helpful (a Lego kit is always helpful for passing the time),

friendly (conversation hearts have friendly sayings whether you eat them yourself or share them with others),

courteous (Tic Tacs help you be courteous by making sure your breath is nice before you speak to others),

kind (you should always be kind to your feet and foot cream will help you),

obedient (when you are being obedient and following orders and marching, socks will be your constant companion),

cheerful (there’s no way not to be cheerful when you’ve got comic books to read),

thrifty (you need to shave and disposable razors are the thrifty way to do it),

brave (if you get a cut, superhero band-aids will help you be brave),

clean (no explanation is necessary for how toilet paper helps you get clean),

and reverent (throat lozenges help you be reverent by making sure you can always pray, even out loud)

(and always hungry (while technically not part of The Scout Law, we all know Scouts are always hungry, so jerky will help that just a little)).

We hope my friend’s son and his buddies enjoy the box as much as we enjoyed putting it together!

In Science we learned about plants and have learned about most of the organ systems of the human body. In History we learned about ancient China, the Hebrews, the Phoenicians, and the Americas. We completed quite a few creative art projects from The Art Assignment. Cameron and Adrian have stopped doing Latin now, but Fritz is continuing it on his own. We are continuing learning how to play the piano. We’re all still doing taekwondo for PE. Cameron will be testing for his second degree in June and Cameron earned his first degree in December (Adrian will be testing for his first degree in approximately 6 years at the rate he is going).

Cameron has completed 14 lessons of Math-U-See Geometry. He’s written several research essays, finding more and more reference material on his own. He read the Epic of Gilgamesh, Iliad, Odyssey, Oedipus the King, and Medea. He has switched to Fix-It! Grammar for grammar and vocabulary. That seems to be going very well.

Fritz has completed through lesson 27 of Math-U-See Epsilon (he will move on to Zeta in early February). He finished Outcast and read The Eagle, The Silver Branch, and The Lantern Bearers. During reading time he is currently working his way through the Harry Potter series (he finished Order of the Phoenix today). He has learned to write through the letter s in cursive. His cursive handwriting is surprisingly neat compared to his printing.

Adrian has completed through the middle of lesson 25 of Math-U-See Gamma (he will move on to Delta in late March). He’s in book 6 of Explode the Code. He can identify and mark vowel chunks, consonant chunks, endings, bossy r’s, and more in spelling passages. He finished a children’s retelling of The Odyssey and read Black Ships Before Troy, The Gods and Goddesses of Olympus, and Atalanta’s Race. He is reading very well, but still doesn’t like to do it for fun.

If there is no school, taekwondo, or church, Adrian does not get his Adderall. So, during Christmas break, he rarely took it. Now that he’s back on it daily we’re reminded just what a difference it makes in the boy. He’s calm, he reads really well, he’s very cooperative, and so on. It’s amazing stuff for kids who really need it!